Preparing for onset
Hi all. I am new. Great to have a forum like this. Thankyou. A few weeks back my ophthalmologist said she has good news and bad news… I have Drusen bodies…But I won’t lose my sight for a long time. Early AMD, so early she charted Dryden Bodies present and did not diagnose AMD 😬 She said Drusen in both eyes, that it was progressive, but I had time. My mom had AMD…my dad had glaucoma….yeah she was pretty confident I would eventually have that too! 🥴 My question for you: What is a good way to prepare? We can hope some effective treatment might be available before my vision is affected ( I heard there are some promising drugs in advanced trials) Yay! But is there anything anyone wished you had done before you lost significant sight (either in preparation for the loss of sight that would have been a whole lot easier with sight, or just Buckley list items? I feel a bit weird… I’m pre diagnostic…a gift in a way…I know what is coming. My ophthalmologist put me on AREDS2 and recommended diet and lifestyle stuff. She will re-examine in 6 months.
welcome to our Community and our forums. We're glad you found us. I have a family history of macular degeneration and glaucoma too. I have amd now, but not glaucoma. I do have cataracts though. It's good to hear the condition is in such an early stage for you. There are indeed lots of trials going on and hopefully we get some more treatments soon. I've had amd for ten years, and my vision is still OK. I hope your's progresses very slowly. You seem to have most things covered with the supplements, diet and lifestyle advice from your specialist. Did the specialist mention the Amsler Grid? You can use that to check your vision between appointments. Personally, I've tended to concentrate on trying out technology to assist me in the future. My parents had trouble with the television and the radio, to name just a couple of things, so I can now use my Alexa Dot and Alexa Show to listen to the news, radio stations and music. I also use Alexa to turn my lamps on and off and change the brightness - I love that. There are also kitchen appliances that have this capability. I'll look into those eventually. I'm sure other community members will offer you more suggestions. I hope you find it useful to have a look through our site. Best wishes to you, Wendy, Patient Leader. Thanks Wendy. Glad AMD and glaucoma have not become realities in your life so far and that you have found things that help. I guess I just don’t know where to start. Also, it’s not just about me…. At the moment we have my husband and adult daughter in the house. My husband is very sure he will be available “to drive me wherever and whenever I want to go”, but he has a life to live and I don’t want him fussing. We have to work things out a bit. Has anyone here in the forum made really big changes to their lives before they have been pushed?
you are fortunate to know in advance that you may be diagnosed with macular degeneration. You indicated you don’t know where to start. I have a few suggestions based upon my own experience. My suggestions aren’t meant to replace medical advice from your doctor. Learn all you can about macular degeneration. if you smoke, please stop now. The Mediterranean diet is recommended but I wouldn’t obsess about it. Eat healthy but sometimes you have to eat the cake. The same goes for exercise. Find something you enjoy and do it as often as possible. Do your best to control your weight and blood pressure. Above all, do not stress about what may happen years down the road. I was taught in nursing school that unrelieved stress can kill. I hope you enjoy the years ahead of you. Regards, Sharon Moore patient leader
Thanks Sharon. Yes re diet, smoking, exercise, stress management. I also come from a nursing background. But I was wondering if anyone who was given this gift of time made changes that helped them later when their sight was affected or perhaps wish they had made changes while they had that time with sight. Are there organizations that evaluate the home and make suggestions/modifications to prepare for vision loss? I feel this time should be used productively...or maybe not? Maybe slowing down and "seeing" how this will affect me is the best. Valerie
your best bet would be a visit to a low vision clinic. They can talk to you about preparing your home for vision loss. They can also show you all the aids to help if your vision declines. Check with you state agency for the blind. They should be helpful in planning for a low vision future should you need it. I endeavor to stay tech savvy so I can use it as my vision declines. My new air fryer connects to my Alexa device so I can control it with voice commands. All fire appliance purchases will have this feature. Best wishes, Sharon Moore patient leader Thanks Sharon! That’s so helpful. Valerie
Valarie, one of the best things you can do you are already doing - Checking out this site for support, community & information from others with the same condition - WELCOME! I was diagnosed in my mid-60’s eleven years ago with dry AMD, beginning stages. It took me nearly 5 years before I even noticed any vision changes but everyone is different however you have that covered being monitored by your doctor every 6 months. In most cases, dry AMD progresses very slowly. I am stable & still driving but uncertain that I’ll be able to pass the eye exam in a year to renew my driver’s license. This slow progression has given me plenty of time to consider options when they are needed. Right now, I have MANY magnifying glasses and make sure I have cocoon sunglasses when I’m outside. For now, you seem to be doing all you can. And you are right about the research & trials - there is a lot happening that may slow the progression and/or possibly cure AMD. We are here for you! Linda Hoopes, Team Member
